• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Insurance Response

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Ok, let's say that XMRV is the key. (notice I didn't say cause, but key)

And let's say that in a couple of years, tests show treatments similar to HIV treatments, help.

Now, what do you think will be the response of insurance companies?

That is given it will be much the same as it is now. From what I understand, the healthcare bill has been watered down so much that much will be the same.

Do you think they will say, "Let's cover this so these people don't keep going to doctors and racking up claims?

Or will the drug treatment be so expensive that they will say more proof is needed?

Tina
 

Kati

Patient in training
Messages
5,497
They can cry as loud as they want. They can complain. They can reject what's been rejected. But there is proof coming. There will be treatments. There are biological markers for the disease. They have no choice.

They may even go bankrupt :eek: They will blame it on us. But we have rights. :cool:
 

Eric Johnson from I&I

Senior Member
Messages
337
Nah, the thing is, any treatment for CFS in the past hasn't been supported by a large clinical trial. A phase III trial as they call em. Hundreds in the treatment group, hundreds in the placebo group, double-blind -- stringently done science. When you have a trial like that work out well, you have the FDA and 90% of the medical profession with you. These study designs are highly standardized and there is not much left open to criticism, so people tend to accept them. At that point there's no way an insurance company can resist really.

An amazing amount of medicine, some of it extremely expensive, has been practiced without this kind of empirical evidence, as a matter of tradition -- especially surgeries rather than drugs. This is not always a bad thing. But it's not always a good thing! The infamous example is super-dose chemo for certain breast cancers, so toxic that it wrecks your immune system, which has to be reconstituted from marrow cells taken from you beforehand. This procedure has a certain death rate, and I think it costs, I don't know, maybe $150,000? Which is the price of a house, in the Midwest. When it was actually studied, this turned out to be no better than much milder levels of chemo, and I think those findings were accepted pretty rapidly.

It's things in that gray area that insurance companies mostly quibble about on the large scale. Every CFS treatment so far is in that gray area, so it's all we know. Tough for me to remember sometimes as a CFSer, but on average society actually responds quite decently to the problems of disease.
 

mezombie

Senior Member
Messages
324
Location
East Coast city, USA
Insurance companies cover anti-retroviral treatments for HIV/AIDS patients. If XMRV turns out to be our "HIV", I don't see why treatment wouldn't be covered.

As Judy Mikovits and others have stated, there are existing drugs that might help, like AZT.

Also, off-label prescriptions (prescribing a drug for something other than approved by the FDA) are increasingly common. Often pharmaceutical companies encourage that as going through the FDA process to get an existing drug approved for another use is long and arduous.